Studying with illnesses and disabilities can be a challenge. But if the illness is then not visible to fellow students, completely different hurdles and situations arise again. With obvious illnesses such as a broken leg, no one is surprised when the person rides the lift even to the first floor. If the illness is not visible, it is often smiled at or insults are even hurled. We also have students with invisible diseases at the University of Stuttgart.
The so-called invisible diseases include mental illnesses, epilepsy, diabetes and multiple sclerosis. Often the symptoms are apparent but are not attributed to an illness because healthy people know them too. This can be the case, for example, with tiredness and fatigue. Well-intentioned tips such as an earlier bedtime, however, do not help those affected. Often, affected persons are also accused of only faking it or using the disease as an excuse for a wrong lifestyle. These accusations are a double burden for those affected.
In order to reduce prejudices and increase understanding for those affected, we report on studying with invisible diseases. For this purpose, we asked various students about their experiences during their studies. You can find the reports with editorial changes here. Some of the reports are anonymous, but some also contain contact details.
For students with illnesses or disabilities:
If you yourself have a chronic illness or disability, you can contact the responsible person from the University (studium-mit-handicap@uni-stuttgart.de). There are also disadvantage compensations that can help you in your studies. Our Department of Equality, Diversity and Social Affairs has also set up a group for students with chronic or mental illnesses or disabilities. If you would like to take part in the group’s meetings, you can contact beeintraechtigung@stuvus.uni-stuttgart.de. We would also be happy to add your experience report to this page. Contact us by email at referentin-oeffentlichkeit@stuvus.uni-stuttgart.de or via Instagram (@stuvus.unistuttgart).
“In the midst of a hitherto successful but intense Master’s thesis, I fell into a deep hole from which I am still not completely out.”
Depression
Hi folks,
As part of stuvus’ campaign to create more awareness for invisible illnesses, I want to share my experiences with you. I’ll tell you briefly how I feel, but mainly it’s about you and giving you help and hope.
I am 25 years old and at the end of a long and difficult scientific study. I was diagnosed with depression when I was 16. I have been through the whole process of education, therapy, medication and acceptance. I’ve coped well so far, or at least I thought I had. The kind of depression that plagues me comes in phases, so every few weeks I’m mildly to moderately depressed for a few days. During the exam period it would last longer, but sometimes my brain would decide to go on strike for ‘no reason’. It hasn’t affected me tragically in my studies so far. I had to postpone an exam here and there because studying is impossible during the difficult phases. But I felt quite confident and secure in dealing with the disease. It was a struggle and it remains a struggle but I had enough help from doctors and therapists and support from my family and partner to deal with it. It was only friends that I never told. You might know this. I was just too afraid of misunderstanding and judgement or that my friends would suddenly see or treat me differently.
It was only at the beginning of this year that I had to change my attitude. In the midst of a successful but intensive Master’s thesis, I fell into a deep hole from which I am still not completely out. I started to feel that ‘everything was not okay’ and my body went on strike completely. I had to struggle with sensory loss, pseudodementia, shortness of breath, sleep disturbances and a lethargy that I had not thought possible. For a long time I couldn’t even admit what was happening to me because I had been convinced that I had everything under control and that I knew and understood my body. This was followed by the abandonment of my Master’s thesis because I was unable to cope with the strain. I was even unable to live at times (cooking, showering, shopping were extremely difficult) so I was very grateful for my family who took care of me. I was also lucky enough to be admitted to a day clinic and to get a therapy place afterwards. I am currently changing my life (and hopefully my brain) and trying to get ‘back’ into a new routine.
Now to you. To you. I don’t know how you are. Maybe you know exactly what I am talking about, because you are also ‘chronically’ ill. Maybe you are in a depressive mood due to the pandemic or a stressful time at university. Maybe you are in grief or shock over something or someone lost. There are so many types and forms of this invisible illness and with all of them it is important to recognise it and seek help. The ‘Deutsche Depressionshilfe’ offers a symptom self-test online if you are not sure what all is involved. The most important thing is to communicate. In the extreme phase I’m going through, with a heavy heart I let in carers, friends and fellow students and I was surprised. I experienced understanding, acceptance, support and I didn’t have to explain or justify myself. I know it would be easier if you were bleeding or limping, then everyone would see you were unwell and you wouldn’t have to explain anything. But the fear of being misunderstood should not stop you from seeking help. The most important thing is that you accept and acknowledge that you are ill and that this illness is just as dramatic as an open hernia or chronic kidney disease and therefore requires just as drastic measures! On the way to help, you can start with the counselling centre of the Studierendenwerk. You might have to wait a bit, but you’ll get a talk with a psychologist(s) and they can help you with the next steps. It’s super important to go to therapy if you can’t help yourself or don’t understand exactly what’s wrong. Talking to friends is good, but I’ve always found it extremely relieving to have someone independent to discuss everything with. Because your loved ones should know and understand how you are and how to deal with you, but they should not be responsible for treating you. Therapy is nothing dramatic and the best remedy for depression (and everything that goes with it) that I can recommend to you. You can go to a therapist for a diagnosis without a referral or anything else. This and the subsequent therapy are covered by the health insurance and you can take care of it quite discreetly if you don’t want to tell anyone about it at first. I know it’s hard to get a place at the moment, but don’t give up! You can easily get a list of all the therapists in your area at the KVBW Ärztesuche. Get help from your partner or family etc. to make phone calls and write emails! Your health insurance can also help you get a therapy place. In an emergency, for example, if you have suicidal thoughts, you should definitely contact an outpatient psychiatric clinic. They can be reached 24/7 and will help you.
Especially with depression, it seems infinitely painful, tedious and actually impossible to take care of all this. Fighting is always more painful than enduring. But it is your chance to actively do something for your health! You are strong. No matter how the disease affects you, don’t play it down and don’t ignore it. Sooner or later you have to pay the price, I had to learn that the hard way. Our body and soul force us to take a break if we ignore their plight for too long. So take action beforehand and be kind and caring to yourself! Treat yourself as you would treat a friend who is unwell. The good news is that you CAN do something to make yourself feel better. This is not always the case with other illnesses.
Finally, a thought for relatives (sick or not) who enjoy the trust of a person with an invisible illness and who are told about their suffering: Acknowledging and validating that your counterpart has a painful, serious illness does not in any way mean that your problems are less serious or your pain less severe and important! Pain should not and must not be compared. Someone revealing themselves to you is not looking for pity or validation or thinking that their pain is greater than yours. That is simply not true either. Try to look at the person and their illness objectively. Giving someone understanding and help does not mean that you do not deserve exactly the same understanding or help yourself.
Let’s work together to address misconceptions around depression and break the taboo by being more open about it, practising acceptance, informing ourselves and not judging those affected.
“However, full-time, face-to-face study is impossible for me.”
Isabel, Social Sciences (Bachelor), ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)
Two years ago I had a viral infection that developed into the neuroimmunological disease Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS).
To understand what it means to live with this disease, imagine a mobile phone. But one with a very bad battery. Because this one, my battery, never charges to one hundred percent, no matter how long it is connected to the cable, it only reaches a maximum of about 60%. What’s more, it discharges much faster than a normal mobile phone. It takes twice as long to recharge it as it does to recharge functioning batteries.
But of course I’m not a mobile phone, I’m a human being. And in reality, this illness is somewhat more complex and manifests itself in a variety of symptoms. In short, it’s a bit like having a very severe flu with aching limbs, head, muscles and throat…. accompanied by leaden physical and cognitive exhaustion.
I don’t think it’s very difficult to imagine that these symptoms cause difficulties in everyday life at university. After I had to stop my studies at first, I was able to take a few courses online again “thanks to” Corona, but full-time, face-to-face study is impossible for me.
It’s hard to make others understand how exhausting seemingly mundane activities like walking up stairs, riding the bus, reading literature, carrying a backpack, social interaction, etc. are when you look “normal” at first glance. If I lie in a dark room several times a day to rest, no one sees that.
As much as I would like to study in presence, I still hope that the newly acquired online possibilities will also become established to allow me (and many others) to participate more in my studies.
(For those who would like more information on ME/CFS, I recommend the arte documentary: https://www.arte.tv/de/videos/096283-000-A/die-raetselhafte-krankheit-leben-mit-me-cfs/)
“Mental illness was not talked about.”
Bea, 24, depression
When I started studying at the University of Stuttgart at 18, I had a diagnosed clinical depression. Even during school I often felt stressed, overwhelmed and anxious inside. The feeling of not being able to cope with life and not being good enough for it has accompanied me since then. The depression was always accompanied by social anxiety, although I don’t know whether in my case the depression determines the anxiety or whether it’s the other way round. In any case, the two get along pretty well and usually appear together, which doesn’t exactly make the transition from school to university any easier. If you can’t bring yourself to make contact with other people and ask questions in your studies, you get lost relatively quickly and remain alone.
Actually, no one is really interested in you: If you aim to be invisible, you often succeed quite well. You are one person among many, you have to organise yourself, and it’s up to you whether and how much you get involved in and alongside your studies at university. If you don’t want to, you don’t have to talk to anyone. Most of the time it’s not like at school, where people still look at your grades and whether you’re doing halfway well, because there are a hundred other students in the lecture hall. That’s why it was difficult for me personally to settle into my studies, and I know that I never really managed it. A lot of things were too loud, too fast, too difficult for me. Although I always wanted and looked for connections, I never felt I belonged to a group. After my studies, only two people remain with whom I still have regular contact; the others were lost to me in the course of my studies because maintaining social contacts is very exhausting for me. On the one hand, this is because I would describe myself as an introvert; on the other hand, my anxiety intensifies my desire to be alone, so I want to have contact but at the same time I just want to withdraw.
What was difficult for me the whole time was that I felt alone with my illness at university. Mental illness was not discussed, not at the beginning of my studies in the introductory courses, nor in individual seminars, nor with fellow students. I often didn’t dare talk about my depression because I was afraid of not being understood and appearing weak. It would have been perfectly OK to talk about it and I would certainly have met with more understanding than I thought at the time. But depression was a silent affliction for me: I didn’t find the words to express myself in front of my fellow students, nor did I have the opportunity to talk about it in a quiet moment. In retrospect, I think it’s a shame that there was no self-help group or anything like that where you could have shared your experiences (there is one now). People with depression tend to withdraw and need to be made aware that there is the possibility of meeting other people who feel similarly. Depression does not usually show itself by a person sitting in the lecture looking sad and crying all the time. Sometimes a seat in the lecture simply remains empty because the person in question did not have the energy to come to university. Depression has many faces and if we look closely, we can see them. And if we talk to each other and listen carefully, we learn about it. I wish that at university and in society in general, these supposedly invisible illnesses no longer have to remain invisible, but that we deal with them more transparently.
“For the next few weeks, I threw up every morning just before I set off for university.”
Trauma
In my very first semester, after just a few weeks of studying, I unfortunately had a very unpleasant experience on my way to university. I don’t want to go into details. Immediately after my statement to the criminal investigation department, it was suggested to me that I should talk to one of the chaplains who were called in especially for the witnesses. I took them up on the offer, didn’t go to university that day and tried to distract myself. I lay awake most of the night and then went to university the next day. Going back down the same road where I had experienced something bad just one day before caused me to panic. For the next few weeks, I threw up every morning just before I left for university. At the university, my fellow students, whom I had only known for a few weeks, all understood that I wasn’t much help with group assignments and group presentations. But it could have been different. One of my lecturers offered me support and said that I shouldn’t worry about university now and that we would find a solution if I couldn’t complete my submissions on time. At the end of the semester, this lecturer wrote me a very nice message for feedback on my submission. I was very touched by that and I still have the message.
But the trauma also brought difficulties at university. I quickly moved from the chaplain to the district psychological counselling centre, as I realised I needed more help. There, severe trauma was diagnosed quite quickly and the “prospect” of PTSD was brought into the conversation. I went to the counselling centre regularly for several months. Anyone who has ever dealt with mental health issues and sought help probably knows how hard it is to even get an appointment. Because of my experience, I was considered such an urgent case that I got appointments quite easily and quickly, but I didn’t have much choice. This meant that I had to go straight to the university after the appointment. Every now and then I missed the train and was accordingly late for the lecture. Fortunately, I was never asked why I was late. I was quite afraid of this question, because I didn’t want to have to say in front of quite a lot of people that I had mental health problems and therefore had an appointment.
The stigma that comes with mental illness unfortunately still exists. I decided at some point to talk openly about it. Still, I didn’t want to have the reputation that I was “the one with the trauma”. I find the mix between awareness and loss of privacy very difficult.
Even now, years later, I still have problems because of the incident. I would never have thought that a few minutes could throw my life off track like that. I can now cope with everything much better, but I still often find myself in situations that remind me of that time and cause me to panic.
With regard to my studies, I have had mixed experiences. Due to concentration and sleep problems as well as panic on the way to university, the start of my studies was probably more difficult for me than for healthy people. I received support from a few people. At the time, I didn’t know that there was an office at the university for people with disabilities, which probably included me at the time, and that the Studierendenwerk also offered counselling. I would have liked more information from the university. Unfortunately, I also received stupid comments at the university. A tutor once made a joke about trauma. Especially from teaching staff, even if they are still students themselves, I would like to see a different way of dealing with mental illness.
“I don’t use my illness as an excuse.”
Asthma & a hyper-reactive bronchial system
In my school days, I had a cough that didn’t go away for months. I couldn’t seem to catch my breath with any exertion, no matter how small. At some point I overcame my fear of doctors and went to my paediatrician at the time. He said it was just a “smoker’s cough” – but I had never smoked a cigarette. After various tests that didn’t produce any results, I was referred to a lung specialist. There, I couldn’t even do some of the tests properly because I couldn’t breathe enough. Finally it was clear: I have asthma and a hyper-reactive bronchial system. Most people are probably familiar with asthma. You get less air and are usually always on an inhaler. For me, this has meant that my daily routine has changed quite a bit. Instead of exercising three times a week, I now get almost no air when I walk up a flight of stairs at a normal pace for other people. To put it simply, my hyper-reactive bronchial system means that I get severe coughing fits and sometimes no air at all if the air is too cold, but also smoke, deodorant and perfume.
If I haven’t completely overestimated my physical performance and hold my inhaler in my hand, you can’t see my illnesses. What is visible, however, are the steps I take to avoid shortness of breath. Since my lungs don’t quite want to go up and down stairs, I take the lift for almost all my trips to higher floors. Unfortunately, this also leads to very unpleasant situations when I’m not alone in the lift. If the lift stops after only two floors, I often hear people rolling their eyes or giving me looks. Once I also heard someone call me lazy after I had just got off. That annoys me, because I am certainly not a lazy person and would like to go back to doing sport like I used to. If I had a broken leg, probably (or at least I hope) no one would say anything to me or look at me judgmentally. But since I have an invisible illness, no one seems to think that I might not be lazy, but simply have limited health. I realise that this is not necessarily the most obvious explanation, especially if you are not familiar with lung diseases, but I don’t think people should be so quick to judge.
Another rather unpleasant side effect of my invisible illness is that everyone suddenly becomes a doctor. When I explain to someone why I can’t take the stairs to the fourth floor, for example, or why I can’t ride my bike up a hill, I often get answers like: “But my cousin also has asthma and can breathe normally” or “I also have asthma and often go jogging”. I don’t use my illness as an excuse. On the contrary, I was exempted from school sports because of my illness and still tried for a very long time with the help of the asthma spray, but in the end I was advised against it because I was too dependent on the spray. Still, everyone seems to know better. Many people don’t seem to realise that asthma doesn’t affect everyone’s daily life in the same way. Even at university, I often had to hear that person XY didn’t have a problem with it at all.
As I mentioned before, the hyper-reactive bronchial system affects me in such a way that I have to cough heavily when I breathe smoke and I can’t breathe any more. Since I hardly have any smokers in my private environment, this is not a problem. It’s mainly when I go to university that it gets difficult. It usually starts on the way to university when I’m standing on the platform and someone smokes next to me despite the smoking ban. I walk further away, but at least at my stop there seem to be quite a few smokers, so it’s sometimes not easy to keep a sufficient distance. When I arrive at the university, I usually go straight on. Although the ashtrays are placed a little away from the door and there are even signs on the doors saying that you shouldn’t smoke directly at the entrances and exits, there are often smokers standing right in front of the door. This means that I have to walk through the smoke when I want to enter or leave the building. Even though you should respect the fact that some people just don’t want to smell of smoke, I think many people just don’t realise that it’s not just about the smell. For example, I often enter the university coughing, which of course goes badly in the pandemic and was unpleasant even before the pandemic.
“I was too young to be sick, he said.”
Depression and anxiety disorder
I was meanwhile first diagnosed with a depressive episode and social phobia seven years ago. Since I started studying, I’ve been back in therapy regularly and taking antidepressants. Nevertheless, my everyday life unfortunately looks a bit different from that of ‘normal’ students. Or at least than what is considered normal.
Sometimes it feels like I’m on the outside watching everyone else manage their lives so much better than I do. Often I hear: Is everything OK? Are you sad again today? But depression is so much more than sadness.
It can look very different in different people. For me, it’s sleepless, panicky nights and no strength to get up during the day. The feeling that it would be no use anyway. Now, at the beginning of the attendance semester, stomach cramps, nausea before lectures. Not being able to breathe. Fear of each new day.
The online semesters helped a bit, it was just a click into the lecture and not a crowd of people who could all judge you. On the other hand, you also sat alone in front of the material until you felt like you were being overrun and sinking.
The stress and pressure of studying intensifies the symptoms and I try to keep performing so that no one notices that I’m struggling with more than the material. I can’t imagine what it would be like without it all.
When you don’t look in the mirror and see a stranger. When where there should be laughter, there is emptiness. The blank page plunges me back into a vortex, a hole of ‘I can’t do this, I can’t do that’. Reading a sentence again and again and still not understanding anything. Fog in my head. So much time passes before I feel strong enough to tackle a normal day again. Fainting spells and panic attacks.
Thoughts like: Why can’t I just do the same? What’s so hard about concentrating? Or lifting the pen?
Last semester, I fooled myself into thinking that I could and indirectly made things much worse. I took too many courses, wrote super grades, was always prepared. Unfortunately, I often encountered lecturers who emphasised that others were worse off. I was too young to be sick. In seminars, they sometimes used old, insulting terms for mental illness.
Or who think they can tell me exactly how I should feel.
That’s why we so urgently need education for mental illnesses, education for invisible illnesses. You never know what the other person is going through and phrases like: It’s not that bad; are you sure you’re sick; the others can handle it too, can do a lot more damage than you think.
At some point I have to accept it. I need a lot more time than most. Leave semesters, disadvantage compensation, less workload – that’s all fine and I’m allowed to make use of it. The important thing is that I’m doing well. And sometimes even the lecturers help, as they did just a few weeks ago. One lecturer assured me that my health was the most important thing and that we would manage the exam somehow.
Again and again I wished that more people would understand that. That studying shouldn’t come before one’s health.
“That you just have to start crying, yes, even during university.”
Meja, 22, highly sensitivity
My name is Meja and I am 22 years old. That means I have been living with my personal high sensitivity for 22 years.
What does high sensitivity mean and why my own personal one?
First of all, high sensitivity is not a disease, but rather a personality trait that lies in the brain. In my head, certain areas are more pronounced and interconnected. As a highly sensitive person, I perceive many more stimuli and emotions than others. Hence my personal high sensitivity – every highly sensitive person reacts more sensitively to certain situations, so there are many different manifestations. Some feel more connected to nature, others to animals, I to people.
This overstimulation also has considerable disadvantages in life and especially in university life.
Okay, let’s get into the everyday life of my personal high sensitivity together, so I’ll let you get very close to me now:
Good morning, I hope you slept well – no you didn’t. You are highly sensitive, you hardly ever sleep well. Nightmares are part of your life, nightmares that feel incredibly real. They often haunt you all day long, even during your lectures at university. You have to think about them again and again. Thinking is part of your life anyway. You think too much all day long and often think about very stressful things that hurt you terribly. So obsessive thoughts are also part of your life. Sometimes they are so painfully loud that you just have to start crying, yes, even during university. It’s OK, you’re living well with it now, but it’s still not nice. Stuttgart is always too loud for you. Travelling by train is annoying for most people, but especially for you. Your head can’t filter anything. So while everyone outside has long been able to block out the clicking of the train or the loud breathing of your grandfather, the many noises and smells of the people overwhelm you. Perfume does not smell pleasant to you, it disturbs you. Moreover, you associate every smell directly with events in your life, good and bad. So Zara Man makes you irritated because it reminds you of your brainless ex-boyfriend and Hugo Boss Orange makes you cry because you know you can never smell it on your father again. So some factors why your day is already incredibly stressful. So crowds are incredibly stressful and also very physically demanding. You always get earaches on very highly sensitive days, that’s what your psyche has created to compensate. Arriving at the main station, you take a deep breath and walk towards the university. No problem, if it weren’t for this one thing. You can feel the emotions of others in your own body. You feel the pain of the world in your own special way. You’re so good at it by now that sometimes you know exactly what people are going through. So with other people’s pain in your heart you have arrived at the university. Normally you can relax a bit here now because you have your friends around you. But today you are writing an exam, which makes you anxious. Insecurity is directly related to high sensitivity. It is a very distinctive characteristic of high sensitivity and you have it even more than others, of course. It comes from your experiences as a child. You were always different and that was made clear to you. Everyone made that clear to you, parents, teachers and friends. You were never good enough for the systems at school and for your own family. Your crying was dismissed with “don’t be so sensitive” or with punishments. You were punished for who you are. No one saw your high sensitivity because no one had ever heard of it or believed it. So you grew up thinking you were wrong, different, defective, broken and not good enough for anyone. A pain that your insecurities never let you forget. No one told you that you were great and special. Not even your parents. So you never knew security. So even the university system is not for your way of thinking and traits, so you always have to adapt. An exam is hard for you, you constantly hear people breathing around you and every noise distracts you. Panic regularly overcomes you and you begin to doubt yourself. You are such a miracle worker and yet you don’t trust your abilities.
When you hand in your exam, you feel guilty – you must have done too badly. You feel guilty too often and too quickly. Emotions hang over you for days. This makes jealousy or an argument much more painful for you because it often triggers your obsessive thoughts. Obsessive thoughts involve incredibly painful feelings and interference in your university life, as well as in life in general. They often lead to more nightmares or thoughts that keep you awake. You are constantly tired because your brain is thinking and feeling much more intensely, and you can’t get the sleep you need to compensate. All this is not visible from the outside. Nobody really understands what it means to always feel everything and see everything. You are incredibly attentive, you notice every detail. But that can be lonely. You recognise everyone as they are – no one sees you as you really are. So you often feel overlooked and very small in this world, in the uni world. You carry all that behind your fun-loving you, yes you are very fun-loving despite all that.
So here are a few advantages, it is not your way to think or write only negatively:
You can do a lot of cool things because of your gift. You hear everything, which often gives you funny advantages. You feel everything – so you know how to make people smile. Your ability to put facial expressions, gestures and tone of voice together very quickly often gives you a big advantage with people you meet for the first time; you always know more about them than they know about you. You feel happiness, love and freedom deep inside you and the warmth of the sun cleanses your emotionally charged day, although you are very sensitive to light. You don’t like driving at night because the lights of the other cars burn your eyes. You react extremely strongly to every stimulus.
Unfortunately, university life has just as little consideration for you as school life, but you have grown up and found out who you are. And in the meantime, your high sensitivity is also your superpower; you make university life easier for others with your magical nature. So even if you have to be careful not to daydream all the time during university and in the evening your experiences of everyday life still resonate for a really long time, you have found your way.
So what can I give you? My life is hard and always full of burdens. That’s me. Nevertheless, I am always cheerful. Death and loss I have to bear more painfully, love and laughter I can feel more intensely. So there is always something special about your illness. You are all very special, I know university can be hard, life can be hard, but I believe in you and above all – I SEE YOU-.
With love Meja
IG: mejabu99 feel free to write to me if you have any questions (I couldn’t write down all the elements here, it would have been too long) and if you are perhaps also highly sensitive or don’t know it, get in touch. You have a home in this world!